Summer is Here

Memorial Day

Surprise!

I had a little more up my sleeve for my husband's 30th birthday than just a dinner with family. Several weeks in advance I emailed all of our immediate family and asked if we could find a day that we could get together to celebrate without him knowing. Everyone jumped on board right away and the plans were made. I smiled when Stephen's dad called to let him know that he and his wife were planning to come visit us from Pittsburgh for Memorial Day weekend. I nodded, "oh, that will be nice." I also smiled every time family members said "we don't have your gift yet" on the actual birthday weekend. My husband, humble as he is, really believed that being taken out to dinner and a few cards was all he was getting for the big 3-0.

Stephen's dad decided on Saturday afternoon that Benjamin absolutely MUST have a new toy. Stephen came in the house to tell me and I agreed that he really didn't need any toys, but if he's insisting...All the rest of the family showed up to the house while they were out. There was a look of complete shock on Stephen's face when he walked in to see both of our families all gathered in the living room to celebrate with him. This was not an easy feat.

Stephen received some very generous gifts from everyone involved and it was nice to see him receiving a few items not related to parenting. The party certainly wouldn't have been the same without Benjamin though. Benjamin's favorite party activities were playing with balloons and helping daddy open gifts (and of course, mom's chocolate cake!!). He now enjoys wandering around the living room with the balloons and pulling them down from the ceiling.

More came out of this than just a party for Stephen. The past couple weeks have been rough on my health with illnesses and now sporadic fevers accompanied by dizziness and exhaustion. I was saddened that I knew I could only handle family for this event and I even began to question if I could handle that. In the end, I only made the cake. Everything else arrived in the hands of family members. I even had help with cleaning up. It is somewhat encouraging to know that I certainly couldn't have done this on my own, but everyone knew that and they stepped in to help.

Two Big Birthdays Warrant the Sailor Suit

This past week, Stephen's grandfather reached the honorable age of 75 years old. Today, Stephen reached the milestone age of 30. After some juggling of schedules, we were able to go out on Saturday evening with Stephen's mom's side of the family to celebrate both occasions. I was admittedly nervous at the thought of taking my rambunctious toddler to a fancy restaurant. His new favorite thing to do at mealtime is throw food on the floor. I was imagining becoming known as "one of those parents" who lets their child wreck anything in his path. Or with beads of sweat running down my face as I pick up after him while everyone stares at me.

In the end, Benjamin did very well and flirted with all of the waitresses. We had a good time playing peek-a-boo with the tablecloth and he thoroughly enjoyed reading the dessert menu and playing with the spoons. Maybe I would be better off not worrying quite so much?

Since Benjamin's great-grandfather is the source of his middle name, I thought it appropriate to snap a photo of the two men, approximately 73 years and 8 months apart in age. Plus Benjamin was just too adorable in his little sailor suit.

Graduations Galore

This past weekend we had the pleasure of celebrating two momentous occasions. On Saturday, my brother graduated from Widener University with his B.S. in management and my good friend Karen graduated from Villanova with her Master's in Civil Engineering.

For once my family managed to be on time in departing for the morning's main event (my brother's graduation), only to be stopped at a police traffic stop on the way to the ceremony. We were a little confused as to the purpose of a traffic stop at 8:45 on Saturday morning, but we soon learned they were checking seatbelts and making sure there were no drunk drivers. We even got a lovely printout of what a cop looks like when he pulls over a drunk driver. Really? Saturday at 8:45 am? My dad informed them that the line of cars they were holding up likely had a once-in-a-lifetime event they were trying to make. I don't think the cop cared. We did make it in plenty of time and upon arriving to campus we got a quick peek of the fabulous home my brother had been inhabiting. At that moment I questioned my desire for Benjamin to go to college.

After finding seats, my dad and I took a brief walk to find the restrooms and asked each other if we ever thought this day would come. My parents were pretty sure it would for my sister and I. Despite my brother's intelligence, he has a knack for unfortunate situations. We thought back to his early days when we frantically searched for him one afternoon, only to have him returned by two strangers after he attempted to turn his Big Wheel onto the onramp for Third Line (a highway outside Toronto). Then there was the incident of the car transplanting the tree. After that, there was the car vs. head incident (pictures of the aftermath available on his facebook page). Needless to say, we are amazed and very proud of his scholastic accomplishments.

The ceremony itself went fairly quickly, though it had a slightly odd tone throughout most of the speeches. I'm not sure I have ever been encouraged so many times to forget about material successes. Towards the end I wondered how my SPF 100 sunscreen was holding up. I have my answer in that I still have tinges of pink in my face today.

Later in the evening, we attended a graduation party for Karen at her parents home. I am completely amazed at her level of engineering intelligence and I think back on our college days in calculus-based physics. The professor kept saying how fun it was. Karen actually believed him. Karen has been a truly reliable friend since I met her our freshman year at PennState. So much so that we lived together our senior year. She was then a bridesmaid in our wedding and was at the hospital shortly after Benjamin's birth to meet "mini-man." She was his first non-family babysitter. I couldn't help but remember the days of our Crystal Light mixtures and Karen calling me one day to say she was trying to make chicken and there was oil splashing all over the wall in our kitchen. I will say again that I am completely amazed at how so much brain power can fit into such a fun person.

I don't know if Stephen or I will ever get it together to go back to school, but for now we will celebrate the accomplishments of others and hope that in approximately 20-21 years, we will be attending the college graduation ceremony of our son (if he survives our parenting for that long).

World Lupus Day May 10

In honor of the day, here is a list of 10 facts you probably don't know about systemic lupus:

1. Lupus is an autoimmune disease that can damage any part of the body. Lupus most commonly affects the skin, musculoskeletal system, kidneys, and cardiovascular system.

2. The average new patient is a non-Caucasian woman in her childbearing years.

3. There has not been a new drug approved for lupus in over 50 years. The most commonly used medications are NSAIDs, steroids, anti-malarial drugs, and in very severe cases, chemo.

4. The average lupus patient waits around 3.5 years for a correct diagnosis.

5. Lupus is the Latin word for wolf and became the name of the disease with the observance of the similarities between a wolf's facial markings and the facial rash many lupus patients experience.

6. There are numerous pregnancy risk factors for lupus patients: miscarriage, preterm delivery, and preeclampsia. Every lupus pregnancy is considered high-risk. There is also a risk of the baby developing heart complications or neonatal lupus.

7. The cause of lupus is unknown. It is believed there is a genetic predisposition along with environmental triggers.

8. An estimated 16,000 new cases of lupus are reported each year.

9. The most common causes of death in lupus patients are kidney failure, infection, and heart disease.

10. Lupus patients are often very sun-sensitive and can get non-sunburn rashes or even flares after exposure.

A Note on Suffering

It's unlikely that most people need help seeing the positive aspects of their lives at the beginning of a difficult situation. Just because a situation is difficult doesn't mean I have forgotten all that I have been blessed with and that I have become completely ungrateful for everything in my life. There will always be something better or worse than my struggles. I am perhaps even more aware of the blessed life that I lead now-I have my diagnosis and I have access to medical care. I have not yet determined the absolute point in suffering, but I do know that suffering causes me to better see God's sovereignty. I can get really overcome with the "nobody understands" bit, but realizing that statement is only true on the human level makes all the difference. I know that if someone wasn't in control of this stuff, it would be nearly impossible to see any point to it. That knowledge is certainly something I have been blessed with. And something I have watched numerous other people be blessed with. There is a small part of me seeing that maybe this is where I will be able to use this illness for a better purpose. I am pressing towards figuring out the "rejoicing in suffering" business, but for now I can dwell on knowing that it has a purpose.

Just Because

I think he's absolutely adorable

Stud Muffin showcases his moves

Lupus and Me

Forgive me for any gripes that may come out of this, but I fully believe in transparency. And I even more so believe in the fact that I need more of it. This past month has not been easy for us as a family. God never promised us an easy life. Almost 4 weeks ago now, I called my doctor in the middle of the workday to ask if he had my test results. He did. He said I pretty definitively have systemic lupus. I didn't cry then. I told him I already knew. It was over ten years in the making. He said it was very serious and I needed to be under the care of a doctor. I could start taking steroids that night and go through a few more rounds of tests to see how various parts of me were functioning. I actually felt pretty numb about the whole idea of it. I knew I needed to go home for the day and I did. And that's when I cried. A strange mixture of tears of joy at finally knowing and tears for the fear of what my life was about to become.

My biggest surprise since learning of my disease has been other people's reactions to it. I must do a really good job of appearing to be ok. But please know that my body is not ok. I'm not sure why it has decided to attack itself (I have antibodies to my own DNA) and I likely will never figure that out. I know I have some subtle signs of the disease that most people probably think are just odd little things about me. Like I have to wear gloves at work when I review data because otherwise my hands go numb and painful. And that "cute flushing" in my face (or so I have been told) is actually a burning face rash called a malar rash. I am learning more about the little things that actually are strong signs of lupus and it's pretty amazing. So far I know that I have inflammation in two layers of my eye, nerve damage, and the signs mentioned above. On a positive note, I do know that my kidneys are functioning well (I woke Stephen to tell him that).

A lot has come out of this diagnosis. Mostly in the form of money out of my pocket. Well, at least it is coming out of the flexible spending account. I like to think I have pretty good health insurance, but with a $40 copay to see a specialist-I can't even imagine what people without insurance have to deal with. More importantly though, I am being taken seriously. I cannot begin to explain how this has affected my state of mind. I think back a lot to a long list of strange symptoms that I wrote for my general doctor when I was in college. The doctor thought I either needed to stop being so paranoid or start taking an antidepressant. And this is why lupus patients go undiagnosed for so long.

I feel a little like a drug addict at this point. I mix liquids in my kitchen at night with Crystal Light in order to combat their awful taste. My day has become a lot more centered around food. Steroids make you really hungry. I am on a taper now, still at the high dose. So I have to eat a lot for breakfast otherwise I think the steroids start eating my stomach. At least that's what it feels like. Then I need to eat dinner before 7:30 so that I can take my nighttime medication on an empty stomach. This has not been easy to fit in with a small window of time from when we get home from work to when Benjamin needs to go to bed. I have to know that the side effects of the steroids are worth the benefits. I suppose my organs are more important than my appearance. I am not looking forward to the physical signs of long-term steroid use. But at least if I gain any weight or develop a slightly rounded face, I can blame it on the drugs. Even if I become slightly more rounded, at least my hair has stopped falling out at the drain-clogging rate it was going pre-steroids.

I have felt great relief in knowing that I'm not crazy, but I am greatly sorrowed by what I know this disease has taken from me and from our family. It is my hope that I would know sooner rather than later how God intends to use this positively. There are certain people I have been able to relate to in the ways of disease that I would never have been able to without this. I've learned how to react to other people's struggles and how to not react. And above all else, I have learned how God feels when we choose to ignore Him. This experience has left me feeling perhaps more isolated than I have ever felt in my entire life. That's probably part of the point. My life stopped, but everyone else's went on. And now I have one place to turn for the support that I need. Is this the way prayer should look?

Mostly through this, I have had to learn how to keep my mouth shut. I have had a lot of strong reactions in my head to this news and it's been hard to keep it in check (and remember that the steroids are likely not helping my moods any). All of a sudden I am incredibly angry with things that are really not worth being angry with. I know people don't mean anything with their comments and complaints. I do request that people stop telling me that I will be ok. I may not be ok. And that is something I need to come to terms with in order to accept this. I think overall, we need to be more supportive of allowing people to deal with their pain. It has become too easy to say something positive to a grieving person than to hold them while they are grieving. And I know I am more guilty of that than anyone else. If I ever tell you to let me know what you need, you probably should or you might end up getting something you don't need from now on.

There have been a few moments of humor with this diagnosis, but mostly there have been a lot of tears and a lot of moments for personal reflection. Several nights now I have gone into Benjamin's room to hold him for hours when I should be sleeping. I wonder what this disease will mean for him in his life. I hope that during flares he doesn't have to tell people that mommy can't come participate because she doesn't feel well. The doctor said I will likely need to learn my limits and learn to sit on the sidelines when I'm not well. My life will likely depend on learning that. Right now I have some degree of pain in lifting him because of the swelling in my wrists. I can deal with that. I don't know if I could deal with not being able to lift him at all. These have been the hardest thoughts to have and the hardest thoughts to stay away from. I know it's probably not helpful right now, but I wonder if I will be able to have any more kids. I am extremely lucky to have Benjamin but I don't know if I could mentally prepare myself to push that luck. I don't know if I'm prepared to deal with a high risk pregnancy either, though I know plenty of others have. Will I be able to adopt? I hope so. But I know being considered "disabled" can make that harder too.

At the end of all of this, I ask for a little bit of grace. And a little bit of humor. And a lot of support. I will likely not become a lupus fundraising allstar but I may, at some point, have to start wearing a purple bracelet and soliciting funds for my upcoming Lupus Walks.

First Haircut

Saturday of Easter weekend demanded a milestone event for Benjamin. It was long overdue, but I finally decided to cave in to the first haircut. We arrived at the barber in the morning, only to be told that he no longer does first haircuts. I explained that I was Ed's daughter and Bobby's sister and he immediately took on the task for us. As a side note, this barber has been cutting my dad's and brother's hair for over 15 years. He even came to our house after my dad's accident to cut his hair for him when he was still wheelchair-bound. He proceeded to let Stephen (and the rest of the customers) know what a great family I come from. I agree.

In any case, back to the point-the haircut. Benjamin did fairly well with the experience, though there were definitely a few shaky moments with a lot of tears. In the end I was forced to see Benjamin as a little boy now-no longer an infant or a baby. He will always be my little baby, but he really is a lot bigger and more grown up now.

Easter

Easter this year coincided with perhaps one of the toughest personal struggles we have endured. Several of our planned events didn't work out as intended, but we had a wonderful holiday. I am even more reminded now that our God does know what we are going through and has experienced every last bit (and more) of any of the sufferings we could experience. This knowledge is far more important than any Easter bunny (or even making it out of the house on Easter Sunday).

We did manage to have a great deal of fun with Benjamin this year dyeing Easter eggs. I'm not sure he understood the delicate nature of the egg, but most of them turned out unscathed. He also had an adorable Easter outfit, but only ended up wearing it for about an hour.

Bathtime

Benjamin is absolutely in love with bathtime and I can't help but smile every time he is playing in there. When he hears the water start running upstairs his face lights up. He even gets upset when we don't put him straight in and instead walk past the bathroom in order to undress him in his room. He has, on numerous occasions, attempted to climb into the bathtub with his clothes and/or diaper still on. He has recently taken to soaking the entire bathroom with his splashing. The joys of childhood.

Snow and Swings

Benjamin's love of the outdoors is becoming more apparent as the days pass. As a fully mobile toddler now, he often goes and gets his shoes, brings them to us, and motions towards his feet. He also likes to walk to the front door, try to open it, and say "bye-bye." As often as I can now, I like to take him to the park or at least take him over to the baby swings in our neighborhood. Too bad he likely inherited our ghostly complexions and the sun may prove to be an enemy to us throughout his childhood. We may, quite possibly, keep the baby sunscreen industry afloat.




The photos above are fairly recent, but Benjamin also had a lot of fun in our huge snowstorm earlier this year. We had a large mountain of snow on our front porch and Benjamin made good use of his snowsuit. It's hard to believe we were housebound by the snow just two months ago and now it's 85 degrees.

Please Touch Museum

In order to give Benjamin some fun after his horrendous surgery and illness, my friend Karen and I decided to take him to the Please Touch Museum in Philadelphia. The ulterior motive was allowing Stephen to paint the living room. A few people questioned whether he would be old enough, but it turned out perfect. Benjamin thoroughly enjoyed the experience and I am amazed at how much he can do at such a young age. He is a man who knows which areas he wants to explore.